Saturday, July 21, 2012

HBOT Here We Come!

16th Annual Jason Klause Golf Tournament

First I want to touch a little bit on Emerson's fundraiser this year, especially since the fundraiser is the reason why we are able to do the HBOT. I want to thank from the bottom of my heart everyone that donated, participated in the tournament, or just came to support my angel. I can't express how much that meant to us all. I also want to thank all the members of the Southwestern Sportsmans Social Club. First for choosing to benefit Emerson again this year, how amazing that you thought of us again to help her gain a better quality of life. And second for taking out a lot of time putting this whole thing together. I know it wasn't an easy task and I thank you all from the bottom of my heart for putting your heart into it and making it the best possible.

I believe we had a great turn out even though it rained. Unfortunately we didn't raise enough money to complete a full 40 hour sessions of HBOT (Hyper Baric Oxygen Therapy) but we are planning to continue with the HBOT and just receive as many sessions as the money allows. :)

Dr. Hatch HBOT

Yesterday July 20, 2012 we visited with Dr. Hatch. It was a two hour meeting so I'll sum it up. First of all he said that he has treated about 35 near drownings with HBOT and it is one of the most difficult injuries to treat. I already knew that but it still made my heart sink. On to better news.... Dr. Hatch said that Emerson is one of the most functioning near drownings he has seen. He said most can't move their head, extremities, or make noises and Emerson does. He said Emerson is very aware just trapped inside her body dying to get out but her brain won't allow it. Again good news but makes me so mad that as her mommy I can't do a damn thing to "get" her out! We continued on with how the accident happened and how long ago. We also discussed other random things like who we were referred by, how angry he gets to hear neurologist talk against HBOT, & how he's treated he's whole family. Even his two sons that had a concussion. He also told us that most near drownings come in striving to be where Emerson is awake, aware, and moving. But since Emerson is already there he can't imagine the progress she can make with this treatment.

After all the talk he did a full physical on Emerson. First he started with her ears and knew right off that someone uses q-tips in her ears. lol. Guilty. I am a big fan of q-tips and using them to clean out kids ears, I hate seeing their wax. lol. But apparently all it does is shoves the wax deep into the ear canal. So after he made me feel horrible for that, lol, he continued the exam. He looked at her eyes but she really wasn't having it, she kept them shut pretty tight. So we moved on to sitting her up in my lap and him testing her reflexes in her legs, good reflexes. Testing her touch sense on the bottom of her foot, good. He also checked for clonus, which I knew she had but only gets maybe one every month if that. And he showed that she does have it but more in the right foot not really at all in the left. In case you don't know what clonus is it's a continuous rhythmic reflex tremor. Again something I already knew but glad to hear I was right. Then he came back up to the eyes. She was ok with him looking now. He noticed that her eyes do dilate but it's delayed and he said that's pretty typical. He then tested her vision. He moved from the right to the left side of her first calling her name to see if she would look. The first time he did it she took about 15 seconds to look at him then he started showing her the light again from the right side then to the left and it took her about 5 seconds to look from right to left at the light. He was so amazed yelling "Great Job Emerson! *giggle* gosh she's just so smart" I have to be honest made me feel so great! I know she's smart and I KNOW she's in there and shes dying to come out. After that he went to her hands which are kind of bad. Her tone is intensified there and her thumb stays pretty much nudged into her plam or in between her pointer and middle finger. She does have reflexes in her arm but they aren't as prominent as in her legs. That's ok with me it's something we already knew. He was done with the exam and we began talking again. Basically he said he won't treat Emerson unless she completes the full 40 sessions because that's the amount needed to see a difference.

Next he talked about what goals we have for Emerson. Now some of you might not understand our goals and why we don't have others in place, and all I can honestly say is once you've been thrown this and been told your daughter will never walk, talk, move, eat, and do basic daily functions ever again you start to rethink what really is important in life. With that said these are the goals we gave him.

1. Communication.
Yes Emerson communicates in her own way but I'd love for her to get across to us and others what's on her mind and not just the basic needs like hungry, hurt, and sleepy which she communicates now with crying. I don't care if she communicates via sign language, "baby talk", or even via an i-pad that puts her thoughts into sentences read out for her. I just want her to communicate her thoughts and feelings.
2. Seizures decreased or gone
 With her having seizures it interrupts all that she's trying to do. So not only will she be able to function more without having seizures to interrupt her but she'd be able to get off so much medication and be "more" awake! She's on 4 seizure medications, just imagine if you were on all that. It makes you drowsy, inpaire judgement, dizzy, and blurred vision. Just read all the cautions. It's crazy. So that would be awesome if she could get off all or even some of the medications.

And that's basically all our goals for now for Emerson. Hopefully we'll achieve both but even one would be great! I know some of you may be wondering why walking isn't on our "wish" list. Well we honestly don't care if she never walks again. I can see every ones mouth dropping now. lol. But think about it how many people out there don't walk and live very normal and happy lives? Exactly! That's how we feel. She can live just as normal as a life as the next person in a wheel chair.

We spoke a little about the financial aspect of this whole thing and then about when we can start. He would like us to begin August 10th because that's when he returns from a trip. So it's set Emerson will begin August 11th and go for 40 sessions. If we see improvement we will be thinking about doing another fundraiser to do another 40 sessions. So please continue to PUSH for Emerson as her journey is not yet over, she's still fighting to have the best quality of life possible and her family is behind her 100% doing the same!

This is the chamber Emerson will be in when the sessions start. There's a tv in front and speakers on the inside. :)

Thursday, February 23, 2012

All Napa!

So I haven't written about Emerson's progress in Napa nor all the changes that have happened this year, it's just been a very hectic year full of many changes. So here it goes.

Napa Center was phenomonal! It was a costly trip which is what we expected but we weren't totally prepared for what came. First of all I'd like to thank Dwan Pitre, Southern Sportsmans Social Club, and all the people who donated on Emerson's behalf because of you all this trip was possible! Our family can not thank you enough!

This was not only Emerson's first plane ride but it was also big brother's. And NOT to my surprise she was quite miserable the entire flight. I brought all the proper preparations in hope it would calm her. I brought some ear plugs, nunnie, blanket, and pillow. And even decided to take her car seat hoping it would make for a more comfortable flight. 
Waiting to board the plane :)


So when we arrived at Napa they began with seeing what Emerson could do and some streches.

Quickly they began to get a feel for Emerson and started her right away with the neuro-suit. She didn't seem to mind it at all. Taken from Napa Center's website this is exactly what the neuro suit is and does. The NeuroSuit, actually frames the body providing support and resistance simultaneously. It improves and changes proprioception (pressure from the joints, ligaments, muscles), reduce a patient’s undesired reflexes, facilitates proper movement and provides additional weight bearing distributed strategically throughout the body. This additional weight bearing provides strong feedback to the brain which helps create new improved patterns of movement such as when walking while the body is maintaining a more upright, correct posture. This neuro suit was only the begining of what Emerson endured her three weeks there. Emerson also did different excercises in the spider cage as well as streches. She also did a few different techniques that the therapsit learned in Venezuela. Emerson's improvement while at Napa was fair. She was definitly more alert, was able to control her tone better, able to sit while holding her at her waist instead of previously at her shoulders.

 While we were there we also were able to try hyperbarics. Hyperbarics is where Emerson was breathing oxygen at a higher level then atmosphere while in an enclosed chamber. The pressurized oxygen allows her to breath and her body to recieve 10-15 times more then normal oxygen. From the 2 1-hour sessions we tried we notcied a difference in Emerson. She was so much more alert, focusing more, and even giggled for the first time.

Above are the two different techniques that the therapists learned from Venezuela. The first one is forcing Emerson to use gravity to pull her self up to midline. The second one is allowing her instinct to take play and pull her legs into crawling position. Not so great in either, the first time around below are videos of her doing them both again at the end of the three weeks. See a difference?

Here are some more pictures of all the things Emerson did.

All in all our trip was very successful! Emerson made some great progress and we even tried hyperbarcs. While there we were also able to see Dr. Hadayat who is a seizure specailist. He ordered blood work for her and examined her head to toe. One of the things he said about her was that her soul was detached from her body and she was still in a state of shock from her accident. Also that she has the stress level of one in Iraq. Here is what I pulled straight from the findings overview I recieved from Dr. Hadayat.

Patient remains in a state of shock from the drowning; Emerson’s learning potential is blocked for a Number of reasons: insufficient dopamine and central norepinephrine activity, and poor access to her memory to build upon when learning new things; most of this is due to the stress of the drowning and the over--‐stimulation of the adrenal gland; Emerson seems to be lost in her own mind and not emotionally engaged with her environment. Recommend exposure to small groups of relatives and compassionate friends; Recommend prayers and spiritual work as well; Recommend speaking to Emerson directly and telling her how much you love her and want her to stay, that the drowning is over and things will get better.
Refractory seizure state arises from an over--‐stimulated adrenal gland with elevated ACTH and strong parasympathetic activity; typical secondary factors are less pronounced (mitochondrial strain— present but minor), rather there is a profound ischemic tendency, which may cause acute periods of metabolic insufficiency leading to seizures throughout the day. Benefit of hyperbaric oxygen will be primarily to improve circulation, though it should also improve the redox insufficiency.
2.5 year old female with strong seizure terrain from over--‐stimulation of adrenals, over--‐activity

Parasympathetic activity, and areas of ischemia. Patient appears to be in a state of shock from her drowning and may not have fully re--‐integrated with her body; There is a blockage of normal mental development.
OTHER (Supplements,Diet) Hyperbaric oxygen, 1.3 ATM, 1--‐2\ times per day for 40 days, then repeat every 4 weeks

We truly are honored to have been able to even see this specialist being that he only visits Napa Center monthly and we happened to be there and get an appointment. He put Emerson on some tinsures, suppositorys, herbs, and other various things. We have seen a great deal of decreased seizure activity and couldn't be more gratful of Dr. Hadayat!

So three weeks came and went really fast. Not only did Emerson make some great gains but we met a GREAT group of people that we will never forget!